December 23, 2020 at 12:57 pm
In september of 2017 I got GBS while traveling in Spain. Within days I was completely paralyzed and diagnosed with AMAN. It was determined that I got this from a Bacteria. I got my first flu shot a few months ago; no side affects. I am planning on getting the covid-19 shot as soon as it’s available. By the way I was 70 when I got this and I am only back to 60% of normal. ( Who needs working hands and lower legs anyway!)February 5, 2020 at 3:39 pm
Thanks Jim for the info. I am thinking of going to see Dr. Lewis at Cedar Sinai. Do you know of him?January 25, 2020 at 11:10 pm
I am starting my 3rd year with AMAN. In 2019 I had 7 IVIG infusions but I don’t think they helped at all. My history is as follows: while traveling in Spain in 2017(70 years old)I woke up one morning with a heaviness in my legs. That evening I fell down and couldn’t get up. ( no pain at all) my legs didn’t work. I was taken to a hospital in Spain and a neurologist on duty gave me a quick exam and started me on IVIG that evening. I didn’t know what GBS was! By the next day I lost the use of my arms and hands but my breathing remained stable. I spent two weeks in the Spanish hospital not understanding what was wrong with me. I assume I would wake up one morning and walkout. I had all my sensory nerves working, no pain at all. After two weeks they advise me to go back to the states, California. I went straight to a local hospital,(on a stretcher) where they did more tests and concluded that I had GBS as the Spanish doctored had noted. I spent three days in the hospital and then I was moved to a rehab clinic. Here they said I was hopeless and sent me home after 20 days. No PT. My insurance company, Kaiser, said they couldn’t do anything for me. Being on Medicare I changed insurance at the beginning of 2018 and begin getting in-home PT. Finally some hope and movement. As of January 2020 I can walk with lower leg braces and a cane, cannot do stairs and my hands are a mess. My question is this as good as it gets? My doctor keeps telling me to be patient. I’m 73 and running out of patience. I want to walk and use my hands like a normal person. Will my nerves ever regenerate? I’ve tried to stay positive these past 27 months but I am running out of gas!March 11, 2019 at 3:02 pm
I got GBS while traveling in Spain; fell flat on my face one afternoon and went directly to a Spansh hospital. A neurologist was on duty and diagnosed GBS that very evening. ( I didn’t even know what GBS was and assume I would wake up the next day OK!) They started me on IVIG the very next day for 4 consecutive days. My arms and legs were paralyzed but I guess I was lucky since it did not affect my lungs. I was never in any pain.
Other then the language barrier the Spanish doctors were great. (I returned to the states after two weeks) I didn’t start regaining any movement for for almost four months. I am now in my 17th month and I can walk using a walker. My hands are still a problem as is my lower legs and feet. I have no pain but tire easily. My neurologist uses one word, “patience”. My advice to you is don”t give up. I am 72, was very active, and if it wasn’t for family and friends I would have said good-bye a year ago. I’m starting another round of IVIG and hopefully I might see some additional improvements soon. What else can we do?December 15, 2018 at 12:12 pm
I was diagnosed with AMAN 13 months ago at the age of 71 while traveling in Spain. The spanish doctor started me with an IVIG treatment that very night. I lost the use of my legs and arms overnight but I believe the IVIG treatment kept the disease from my lungs. After two weeks I was transferred to the states and was retested again with the same diagnosis; AMAN! My insurance company and doctor put me in a rehab center and I was told I was a hopeless case. I laid in the bed for 3 months with very little PT. Thankfully my wife and kids researched AMAN and talk to Doctors throughout the country. All said that another IVIG or PE would not help; the only thing to do was PT and OT as often as possible. As of today I can walk with a walker, feed myself, shave, bath, etc. I still have PT 2-3 times a week. My legs are still weak as are my hands but getting stronger. MY suggestion is PT/OT and because you are much younger your recovery should be much faster. There is a lot of info on the internet about GBS/AMAN. You will make it through this.